Adopting a Sustainable Community of Practice Model when Developing a Service to Support Patients with Epidermolysis Bullosa (EB): A Stakeholder-Centered Approach
Epidermolysis bullosa (EB) is a rare, genetic skin condition that is complicated, distressing, and painful and permeates every aspect of patients’ lives. Support services are essential for meeting the primary needs of patients and families living with EB; however, provision is challenged by many complex issues. In collaboration with the patient organization DEBRA Ireland, this research conducted an in-depth analysis of Irish healthcare support services for EB, with a view to moving towards an improved and sustainable care pathway.
A sustainable community of practice model (SCOP), as a core construct provided a simplified framework when studying this complex system. The research utilized mixed methods, comprising individual interviews, questionnaires, and a participatory action research workshop based on a soft systems approach. The study engaged patients, family members, service providers, and policy developers.
Findings emphasized that the complexities of life with EB are more than ‘skin deep’. The lived experience of stakeholders revealed many levels of emotion, both positive and heart-rending. Despite the positive efforts of specialists in this field, inadequacies to meet the primary needs of people with EB, such as bandages—fundamental for survival—were highlighted. Participants reported challenges relating to understanding patients’ needs, access to consistent services within hospitals and the community, time constraints, and the strong emotions evoked by this severe and rare disease.
The study identified several areas that can be targeted to bring about improvements in meeting primary needs. Education and research at public, policy, and practice levels need to be prioritized. It is imperative that citizens move beyond an awareness that EB exists and demonstrate a consciousness about the importance of advocating and enabling seamless and sustainable support services through collective action.
KeywordsSupport Service Hospital Staff Participatory Action Research Epidermolysis Bullosa Rich Picture
The authors would like to thank all those who participated in this study. Thanks to DEBRA Ireland for providing funding towards the undertaking of this research.
Dr Rosemary Joan Gowran, lead author and principal investigator for this study, contributed in the main to the design, delivery, and dissemination of this research. Dr Gowran’s academic department received part-funding from DEBRA Ireland to complete this research. Dr Gowran will act as overall guarantor.
Dr Avril Kennan, DEBRA Ireland acted as the patient gatekeeper for the research. She was involved in the planning and design. Dr Kennan provided practical supports to the investigators and contributed to the editing of this paper (editorial control for findings and discussion sections lay with the principal investigator).
Mrs S Marshall, Ms I Mulcahy, Ms S Ní Mhaille, Ms S Beasley, and Mr M Devlin completed literature reviews and conducted and analyzed data for individual interviews and questionnaires and presented individual research papers for different stakeholder groups.
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